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Desy. Hello fellow survivors


Desy
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Hi I'm bonkers sorry Desy from belfast I'm 37 and think I've something in common with you folk, yes I survived went toe to toe with the reaper and kicked his butt!

Well it all started on march the 28th, went to play football with my friends and all was fine, went to walk onto the pitch and remember saying to a team mate that I don't feel up to it, now I was feeling fine physically just something in my head (no pun intended lol) was telling me I was not up for it, sometimes you get that feeling before a game and it could be anything from a lazy day and just not wanting to bother with it to thinking you are not going to play well but physically felt fine, played away and all was well.

45 minutes into game I was hit very hard on the side of the head with the ball, played away but remember rubbing my head and thinking,hmm that's a bit sore for just getting hit with the ball but it was nothing like the headaches most folk on here have had well that was that collapsed like a house of cards.

Ambulance was phoned and on its way, took about 5 minutes as you can see the hospital from the pitch, handy eh, while I was unconscious the contents if my stomach came up and I started to choke on it but my friend and team mate knew first aid and sorted me out by clearing the air ways and putting me in the recovery position, to you my friend I owe you big time.

The first that anyone knew how serious it was came when a few of the boys asked the paramedics what they thought to which the reply came "lads find your self a church and start praying" so that was that of to the royal victoria hospital.

The next two weeks I've no recollection of, 7 days in intensive care then spent 1 day in the hi dependency unit then another two weeks on the neuro ward from where I was transferred to the brain unit in musgrave park hospital where I spent another 4 days and all due to this wee bleed in my head lol.

While at the royal a ct scan revealed that I had an extensive SAH in the right posterior communicating aneurysm and needed coiled but that they would have to wait until the blood disbursed, at this stage it was when my partner was told that I would probably not make it through the night, scary stuff but thankfully she's made of solid stuff,and she never gave up hope and I was duly coiled the next morning but they were not sure if they got enough coils in but must have as it has not leaked, I think lol.

At some stage I had a stroke and lost all movement in my left side of which most came back and by the time I was awake and reasonably alert I had got back but still had a weakness in my leg and a dropped foot.

Was released from hospital after physio and occu therapy and continued as an out patient for physio in musgrave park hospital for,the dropped foot which came back well but now my toes have went, two have hammered and two have clawed and it can be a bit painful but considering what I went through I feel extremely lucky that I have no other physical things that affect me barely even a headache no fatigue, quite the opposite I sleep a lot less and never feel tired.

Was brought back in to hospital for three days two weeks after being freed sorry discharged lol had this weird sensation in my head like water, still have it and loads of tingly sensations and a few random shooting pains in my head, one ct, one mri and a spinal tap later they discovered that I had 5 mini strokes or lesions I think they also called it and that one was near a nerve that operates my arms and legs and one that was close to a nerve for sensations and that was maybe the cause, that was a few about three weeks ago now still get all tingly and head is still buzzing lol.

One thing that makes me sad is when I read nearly all the posts I seem to be the only one with no side effects bar a few wonky toes, very slight memory problems and an electrified head, when I read about the fatigue and headaches that most seem to suffer makes feel sad lucky but sad and I just hope for you folk it gets better.

Hmmm another side affect I have and it's weird but I love it is I can't stop singing lol morning noon and night I'm belting out everything from Neil diamond to will young to abba do get some strange looks but hey hoe it doesn't enjoy me I also I have some real weird vision problems like things looking funny and not real from people to buildings can all get very weird.

I might be the first person on hear to say this but my SAH was the best thing to ever happen to me and I mean that with all my heart, I never been happier so happy in fact I was worried that with these extreme highs would be extreme lows but they never come not that I will let my guard down, just constantly buzzing, singing and talking my out look on life is so much better, a wonderful family who helped me so much even when once or twice my fuse was a bit short.

Back working (self employed tiler, always good for advice ;) and now back playing football twice a week, so hard with my toes but bite the tongue and ignore the pain, also strangely it's easier to run than walk with it but the swelling does be bad from ankle to toes.

With so little side affects you may be wondering why I'm here, it's simple what little side effects I have I come on here to reassure my self that I'm not bonkers lol and that other people have the same problems, I've learned more on this site and can relate to you folk more than my own family when it comes to this thing we are going through, not easy to say that but it's true.

I truly wish that we the survivors can move in the right direction with health and happiness and I will always spare a thought for those you did not make it may you RIP.

Good luck Desy.

Edited by Tina
Added name to title :)
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Hi,

What a fantastic story!! I had my NASAH in Apr and coming around. I have those weird tingly sensations in my head that sometimes makes it way to my legs. I am blessed with no real deficits other than the headaches and fatigue and I am pretty sure my eye sight has changed. Oh yeah, fear. I have fear. Since they could not find a cause of my SAH I wonder sometimes....... Although, all I have read is good.

Your story truly made my day. Thank you Thank you Thank you.

iola

Edited by iola
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Well Desy, bonkers or not, you sound amazingly upbeat and cheerful considering you have been through such a traumatic event! It’s great to hear you’re doing so well and long may it continue. I’m impressed that you are playing football again so soon – do take care. As I have two football mad sons, I understand the desire and passion for the game. In fact I was in Belfast a couple of years ago with my youngest son who was playing in a few friendly games there.

Continue with the singing and as Mary says, Win is the singer on here – I can see a duet forming;-)

Finally and coincidentally I am choosing tiles today for my bathroom – any tips?!!

Best wishes,

Sarah

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Hello Bonkers sorry Desy :-)

You sound in very good spirits which is great- i hope your foot doesn't hurt too much.

I had sah on 8th may and had craniotomy surgery- I'm lucky as not been left with any disabilities (none that ive come across anyway) i do get headaches although not horrendous and i get tired doing the simplest thing but I'm sure that will get better.

Keep singing it makes you feel better - watch out for Win cause she will want to do a duet :-)

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Hi Desy,

Perhaps another day we will give the Green Room our rendition of Danny Boy or a Chas n Dave song. Deal?

My Hubby and Daughter was told I'd be better off in a home but my Alan said "No way" phew as I do not remember calling the OT's a load of witches, as if !!

Glad you, like me, feel the same, thought I was pretending to have had SAH as I was so happy to come through it.

I had shunt fitted as I had hydrocephalus, since then I do not shut up, sing dance and yakety yak though previous

to shunt I was in another world. Weird isn't it, it takes this to make you grateful of what you have.

I still moan though lol

Be Happy oops you are

WinB143 x needed to add comma's to glad you, like me, or it read glad you like me lol daft as a brush x

Edited by Winb143
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Hi guys and thanks for the comments as its so good to hear from people who understand what we are going through especially the mental side of things as pain, for all I get is easy to explain, people looking like gremlins not so easy :shocked: will explain later lol

One thing I should say is that I am useless with names was before my SAH and well safe to say worse now and I can't see the posts while I'm typing my own so don't know the names of the posts I'm replying to but as you read it I hope you know which comments relate to you sorry lol

Opps lost already and don't even know what I'm replying to let alone who so out with the phone to log into BTG on it doh.

Now I have names and posts lol but honestly I always was a bit for forgetful just a bit worse now hehe

Iola my birthday was the sixth of April and spent in hospital :( but still had a party which I just about remember, funny I remember getting two cakes which brought a smile to the nurses faces lol

Hey Mary win was the first name I memorised due to the fact that not only does she sing but also laughs well I take laughing fits and I mean bad sometimes they do get me down as the noise they make attracts every set of eyes and ears in 50m circumference and when it happens when talking to strangers especially doctors, think because they be soooo serious and I'm looking at them then it happens, first the wee muscles at the side of my mouth start contracting then I'm off lol, but as the doctor says as long as you get the good feeling of laughing then its fine as some people laugh but feel no emotion and that's when they said they will be concerned same with the tears as long as there is emotion attached which there is and all happy ones then its fine.

Kempse you may be one of the few people that understands the football thing, football just made me so happy and I'm not even a serious player but from the minute I could think straight I was asking doctors and physios when I could play again, am really struggling with it at the minute due to my foot but just buckle down and get on with it, also feel its a massive part of my recovery and also general fitness.

Cheezo not that I knew or had a choice but I'm so glad I did not have my head opened cant imagine how bad it would be but by reading a few of your posts you really seem to be doing well as there is a lot more recovery than them going in through the groin area, oh and love the hair cut well I do like the New Romantics lol sorryyyy.

Hello Karen it's good to be hear sorry about the off topic stuff, my bad :frown:

Ah ha the famous win well anybody who has "laughter heels us and singing" is famous in my eyes and yeah maybe someday we can have or own karaoke night in the green room :-D.

I can remember lying in hospital after my second stint in and lying there one night crying thinking there was nothing wrong with me and that it was all in my head as the symptoms came and went for hours at a time and that's when the doctor said that denial was another side affect but there is still days now that I feel as if it never happened and have to keep asking about it to reassure my self it did happen also feel as if it wasn't such a big deal basically went to sleep one day and woke up feeling fine bar a headache and a foot that would not move, keep repeating what two different doctors told me "it was like a car crash in your head" and "it was like a hand grenade going of in your head" to remind my self how lucky I was.

Still have lots of other weird things to talk about but if this gets any longer it will need hard backed lol so will be back later.

Be safe, desy

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Hi Desy

You're a live one (no pun intended) and very funny. Enjoyed (although that's a wierd word to use!) reading about what happened and your amazing recovery to date, good for you.

Don't worry about not having the usual side-effects, headaches are very over rated!

Keep the updates coming,

SarahKx

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Hi Desy,

Welcome to BTG. Keep up the positive, happy attitude - humour is the best recovery aid I've come across!

Looking forward to karaoke night with you & Win :wink:

Michelle x

P.S I forgot to say that I have fits of the giggles too, especially with doctors - in particular when one said something had gone wrong with the wiring in my brain. All I could think of was my husband saying 'you're no wired up right' during disagreements - the Dr said similar & I was off :lol:

Edited by goldfish.girl
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Hi Desy,

My birthday is Apr 7th so we are both Aries kids. Sign of strong will. Good luck with all you do. It took me awhile for the positive thinking to kick in but I have so much to live for (we all do) that positive is so much more healing.

iola

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Every night I go to bed and try and think about what has made me smile or laugh not just today but in the past.

I mean shoulders moving and tears running with laughter.

Mornings I think happy thoughts also.

My Mum was a very funny woman and we worked together, we used to laugh so much we always cried.

My Sisters sang to me while I was out of it, that was good medicine and they said I sang with them but cannot

remember any of it. Patients used to ask for requests they said lol

Desy I cannot walk that far but hospital said I would never walk, now I can walk 60/100 yards plus and swimming

helped me.

Good luck and Love to all BTGers

Win xx xx

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Win i have complety giving up on tv all i do is sit on you tube listening to music and all music that i can relate to mostly older stuff and tamara (my partner) just keeps saying that im trying to relive the past but im not im just rembering the good times and most of them involved music.

Today 60 yards tomorrow 61, and if the third day is hard and is 59 then say to yourself that the fourth will be 62 and if it ain't its not a set back its a pause just a rest and the next day you continue going forward one step after another and if days become weeks even months that's ok as the faster you go the less you see around you and we all get there in the end, defiantly think the tortoise enjoyed life more than the rabbit.

Oh and win when you get there dander on down the shops and get me some sweeties lol

Hey mary nothing better than a good oul fit when your with your mates and before you know we are all at it but take tonight, went to a remembrance mass tonight been going for 14years to do a reading and the wee priest knows me as he drinks in my local and he likes a joke well dam I had to fight hard to hold that fit in and you might know this the harder you try the harder it is lol but sure tenmins later I was in tears typical hehe

Sarah I do feel bad grateful but bad think its just so wrong how I feel compared to most folk with a brain injury, I had a chat with a guy the other day first I seen it from it happened and he was all apologetic and sympathising with me and what I went through well you should have seen his face when I said it was the best thing to ever happen to me lol

Never felt so alive feel like I can see every blade of grass and every rain drop fall I'm alive and ready to start living, my confidence has soared I'm just so happy, I do have my moments like that feeling of doom some mornings when I wake up usually, just feels like the world is about to end but it don't last long, also get a fair bit of nausea and my back aches four weeks after a spinal tap, I also get random sharp pains in my head and my foot hurts like hell but it not compared to most people's pains and absolutey no fatigue/tiredness which I think I would struggle with,but for the out look on life and my general happiness it's a very small price.

Like a heavy weight fighter I just seemed to fight and slug my way through life until one day I got hit with a sucker punch and I was down and nearly out but I got to my feet recovered and decided that living life was much easier than battling through it.

Ah iola your birthday is on my hangover day well at least one of us enjoys the 7th :biggrin:

Sorry for the rant but seems that when I start I just can't stop maybe penny can teach me as she seems like a lady with few words lol

Bye d bye

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Desy,

I agree with Bsaints, if you are happy just go for it (I mean Your sweeties, passes money back to Desy get your own sweeties). j/k

Your posts are bright and full of hope and we all need that, sometimes in our life (song there) Lean on me song !!

Never stop being you and be happy or rant on here, it is good for that.

Catch you all later

WinB143 xx

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Desy,

You are a breath of fresh air. I know what you mean about seeing life so much more clearly. I am so grateful for literally everything now. From the top of my head to the tips of my fingers and toes. Every day I wake is a blessing.

Keep smiling, it does the heart good. :)

Iola

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Iola don't mention the heart tis broke too hehehe waiting on an appointment from the mater hospital for an mri as I have an erratic heartbeat and suffer from palpitations lol

Strangely what annoys me is I have been waiting on this scan for about 6 months and yet had one about 6 weeks ago for my head think that's why the nhs has no money, i have no problem waiting on it but surly if there was a bit more communication then the one scan would do both checks and a lot of money would have been saved.

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That is ridiculous Desy definitely should have had scans for both at the one time thats just madness :roll:

I was pretty much a new romantic back in the day so my new hair do is growing on me but i didnt think in a million years id go back to the 80s when i was 46 hahahaha.

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Desy,

I do hope and pray all is well with your heart.

Geez, we must all be children of the 80s. I sure was. I loved the 80s.. I miss big hair and lots of makeup. Not i could wear the clothes today that I wore back then! Ha!

Iola

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